AKA The Black Cloaked Demon
Note: This post has its own page on my blog. I have quite a few new readers (YIPPEE!!!) and I find that I have grown and learned much since I became ill. My illness shades quite a bit of my life. There are times that I may not post for a week or more, these are the times that I have pushed myself to the edge. During these times I go to bed and remain there for long stretches at a time, sometimes days, sometimes a full week.
I decided to dedicate a page to The Demon, as it is a part of me now.
I do not let it define me, I do not let it control me, I have the Kryptonite!!
September 7th, 2012
My 45th birthday.
I slept in, which was lovely, ran a few errands and then went to donate blood.
I got home about 5pm and I started to feel a bit odd. My symptoms were flu-like, but they had come on very quickly. I was hot, the back of my neck hurt, I ached, had a low grade temperature and was extremely nauseous. Instead of celebrating my birthday, I went to bed.
Giving blood was the last thing I did-in my old life.
Over the next few days, I could barely hold up my head. Bruce, my husband, took me to my regular Doctor, who was befuddled with my symptoms and my illness. He sent me for a few blood tests. Gave me an antibiotic.
As the week progressed the pain moved from the back of my neck to the right, and up behind my ear. Not only was there pain, but there was also quite a bit of swelling. Off to the doctor we went. More blood tests and x-rays, and another stronger antibiotic. Doc was thinking that I had Mastoiditis, an infection inside the bone behind my ear.
But all the tests came back clean.
A few days later I awoke and hardly recognized myself. The right side of my face was very swollen, and I had a goose-eggs on my forehead, above my eyebrow and another on the top of my head. The bumps also radiated pain, as if i was being stabbed-repeatedly-in those areas.
I was still running a temperature.
Similar to Cliff Clavin on Cheers-I was beginning to be a regular at my Doctor’s office-and everyone knew my name. More blood tests were ordered and an MRI.
Everything came back normal.
I began taking Vicodin for the pain. And sleeping pills. The pain was so intense that although I was exhausted I could not sleep.
And nothing would lower my temperature. At this point, it seemed, there was nothing my Doctor could do.
Next stop, Infectious Disease Specialist, I may have contracted a rare disease. They gave me an antibiotic that used as a treatment for The Plague and Anthrax.
It did not stop my “Demon”, but succeeded in killing all the good bacteria my body!
My temperature lingered, still.
Next, on to the Neurologist. Another MRI and a CT scan. And more blood tests.
Still no answers.
On to a Rheumatologist. His diagnosis: I did not have Rheumatoid or any other type of arthritis. More blood tests.
Then to an Oncology Phlebotomist. After more blood tests we found out that I did not have cancer. Yeah!
Surprisingly, I still had blood left to draw.
Next, I was touring an entire Cardiac Wing. They searched for fungus in my heart. Scary.
After many tests, tests that took days, and more blood draws, they let me know that my ticker was in tip top shape.
I was repeatedly tested for Lupus and Lyme Disease. Tests came back negative.
Blood diseases…negative results there too.
And the temperature raged on.
I began to notice a black hole in my vision through my right eye. The eyeball itself was twice the normal size and bulging. Back to my Doctor-who continued to be absolutely gobsmacked by all of my developing symptoms.
He immediately sent me to an Ophthalmologist. Many tests were performed, it took longer than normal-as I was in intense pain each time a light was shined in my right eye. I now know what a hot poker feels like-placed directly into and burning through my eye-repeatedly.
Obviously, the Doctor saw something abnormal, sending me off to a Retinal Specialist, ASAP.
This Doctor’s office was really cool. I would have appreciated it more if I was not the
Guinea Pig, er…patient. Many more blood tests, and spot-lights directed into my eyes…an I.V. placed in my arm filled with yellow dye for contrast. My eyes turned yellow, everything took on a golden hue..pretty cool… my face was yellow too!
Then they took these absolutely cool pictures of my eye! As I said, if I was not sick it would have been fascinating.
Finally, we got a bit of an answer.
I had a stroke.
At 45 years of age.
Life had been incredibly stressful throughout the past year, some horrendous things had happened. We had some relief to those issues at the end of August 2012.
I became sick 7 days later. The stroke did not happen on September 7th, the disease happened. My body had held out, functioning and fighting through the stress overload, but could not continue.
When I was younger I enjoyed living on the knife-sharp edge of stress. I felt that it made me sharp.
Do not be fooled.
Take yoga. Breathe deep. Smell the roses.
AKA The Black Cloaked Demon.
Stress took a toll. Paving the way for Autoimmune Disease to take up residence in my body. It was here to stay. Forever.
The stroke was a symptom of the disease. It had nothing to do with my life-style choices. Eating habits or youthful over-indulgences with alcohol. Or my heart.
Unless you take into consideration that my heart had been broken, again. And I did not, or could not, deal with that. I lost.
The stroke also killed half of the retina in my right eye. I am now partially blind.
(The Photo above is my right eye. The round ball of light on the right is the optical nerve. The large blob of light in the center is my dead retina.)
More blood tests. Another MRI.
A trip to Michigan State University to see a Neurologist Ophthalmologist.
He was also confounded by my symptoms. He had never seen anything like this. He had seen strokes of the eye in his elderly patients, 90+ year old patients. But he had never seen anything quite like this and he knew of no treatment.
Not for the blindness or the pain. Not for reducing my temperature and he doubted I would find MY smile again.
There was nothing that he could do. He would like to keep my case open and review it. Share it. Search for a diagnosis. He was a great Doctor, with over 20 years of schooling and knowledge of the eyes and the brain.
But he had no answers.
He sent me for a few more blood tests and sent us home.
At this time most of the swelling and goose-egg type bumps had reduced but I still had intense pain in the right side of my face and head. Driving was out of the question and riding in a car was extremely painful because of the pressure.
I had now been in bed for more than 120 days and constantly doped up with Vicodin.
I began to look at natural products, trying one after the other. Some alleviated the symptoms a bit, but not enough for me to be out of bed for more than a few hours.
Looking into the mirror-I no longer saw myself. It was frightening to glance at a mirror and see someone else’s face look back at me.
And I realized that I had lost my smile. Probably the one thing that I liked the most about myself.
In the last few days of February I began a new natural product. Within a few hours the pain abated (lots of vitamins, minerals, and tons of antioxidants), although I still continued to take Ibuprofen I never took another Vicodin.
A few days later my temperature finally went away!
I had been running a low-grade fever for more than 5 months. This was a huge victory!!!
I began working again mid-March and set up this blog March 21, 2013. More victories.
I get tired quickly when I push myself too hard or for too long- my eye hurts and my temperature rises. My extremities and joints tend to be achy and painful. And I sleep in 15 hour stretches when I need to. Rest seems to be the Demon’s Kryptonite.
I take the same natural product daily and I will for the rest of my life.
When we told the Ophthalmologist Neurologist that I was up and around he was shocked.
He never expected me to get better.
I still have the disease, I always will. I have to manage it.
We have no idea what disease I have, and as long as I can keep the Demon at bay…we never will!
I have learned that I need to stop more, slow down and enjoy life. Enjoy my children and my husband.
Breathe. Inhale deeply and push all the stress out-let it float aloft the exhale-disappearing like a waft of smoke.
The time that I have, the here and now, well, I wasn’t supposed to have this time, I got lucky.
My motto is now:
“You only get one life…get out there and FIGHT for it!!”
(Just do it in a low-stress kind of way!)